Tips for the rocky road ahead

[Salad Rider]

I've been reading this forum for many months now. I've gotten such good information that I have been able to pass along. Finally got the diagnosis for my FIL at Emory ALS Clinic by Dr. Glass. I was told they were a great group of people!

He will be getting his peg Friday. His BiPap is coming next week. He is rapidly losing his muscles in his hands, arms, and legs. Last October he complained of feeling tired and he would lose his breath easily. Up until then, no one noticed anything other than the normal day to day pains of growing older. He was a healthy active 68 year old who traveled, kept up his yard and home, etc. His decline has been shocking.

I'm asking for any tips or advise that has worked for you either as the caregiver or care receiver.

 

[CAHPAH]

Salad Rider
Sorry about your FIL. Are you his primary caregiver? I am the primary caregiver for my wife. Everybody is different in how they deal with illness. My wife has really left most of the research up to me as far as understanding what is going on and the options that are available. I learn what I can explain it to her and she makes up her mind. At that point I simply support her. I would say for you to educate yourself as much as you can and simply be there to give advise, support and love. It's a hard road and I am sorry you have to travel this way. Let me know what I can do to help.
Jim

 

[Phil M]

I've been reading this forum for many months now. I've gotten such good information that I have been able to pass along. Finally got the diagnosis for my FIL at Emory ALS Clinic by Dr. Glass. I was told they were a great group of people!

He will be getting his peg Friday. His BiPap is coming next week. He is rapidly losing his muscles in his hands, arms, and legs. Last October he complained of feeling tired and he would lose his breath easily. Up until then, no one noticed anything other than the normal day to day pains of growing older. He was a healthy active 68 year old who traveled, kept up his yard and home, etc. His decline has been shocking.

I'm asking for any tips or advise that has worked for you either as the caregiver or care receiver.

Sorry for the Dx, I'm bulbar, so mine is a little different. I don't know what to tell you except listen to the clinic. I go to Emory too. They know their stuff.

 

[Salad Rider]

No I'm not the primary caregiver at all. Luckily, my mil is a very healthy woman. I work (in Snellville Phil!) so my contributions will be mostly limited to weekends. Fortunately we have a big close family and I have no doubt everyone will help as needed.

I am concerned about my mil and making sure she gets time to herself. Right now he is functioning well, under the circumstances. That will change, and I would like to help prepare for it. She no longer feels comfortable leaving him alone, afraid he might fall and not be able to get up.

The main personal function he can no longer do is cut up his food. He is still able to feed himself fine. He is able to use a cup with a handle on it that he can get all four of his fingers thru. He is able to walk (slowly) but not for long. He can't sleep on his back. He wears out fast. Today he is crying off and on, worrying about being a prisoner in his own body. That is scaring him terribly. He just got the news yesterday. ALS had not even been mentioned to him before yesterday, so it was a complete shock.

 

[CAHPAH]

How wonderful of you to be thinking of your MIL so soon. You are right, she will need time to get away. Being a primary caregiver is often very taxing. If I may suggest, in order to make things easier for your MIL, as your FIL's needs crop up (and they slowly will get greater) get him used to having someone help him with those needs besides your MIL. It won't be easy for him but my biggest problem with getting anyone to give me a break with my wife is her shyness at allowing someone else (even a close friend or other family member) to help her with her personal needs. If he can get over that hurdle of allowing you or someone else to help him then it will be easier for your MIL to get away. Sending you the very best of wishes.
Jim

 

[Phil M]

I am from Snellville too!

 

[brooksea]

Sorry about your FILs diagnosed.

Have you seen this? Tips, Tricks, and Gadgets - ALS/MND Support Group Forums I've found a lot of help in that forum.

If you have any questions in particular, the people here are very helpful!

Your MIL and FIL may want to stay ahead of the game as much as they can, as equipment can take a long time to get.

Good luck to y'all!

 

[Salad Rider]

Thanks Jim for the idea. My husband will be spending Wednesdays with them, so I will pass the suggestion along. I never would have thought of that, but of course it makes perfect sense!

Hi Phil my neighbor!

Brooksea thanks for the link. That's exactly what I'm aiming for...keeping them ahead of the game. Good preparation will ease the burden a bit. Up until now, MIL has not been receptive to much in the way of change (moving his office from upstairs to down, changing door handles from the ball to the flipper kind (can't grip), bidet, etc, etc). The time has arrived, so let's get going!

 

[mare]

You are certainly being a supportive DIL with jumping in and looking to help both your FIL & MIL. They are truly blessed to have you.
Just remember, "they just got the news yesterday". No matter how long they have been dealing with his issues, getting that diagnosis is catastrophic! Give them time to process all the emotions that come with it. Don't push them too hard.

Of course, you can do all the searching and learn all you can to get prepared for what is to come. And it is best to "prepare early & completely" as one of our moderators and knowledgeable PALS member always says!
You will find lots of helpful info here; perhaps you can tell other family members they can learn here as well.

Jim-
That WAS a great thought/tip about getting other people to help your PALS!
I never thought about it like that but you have given me something to think about.
Thanks for the insight!

 

[chriss]

All good comments above. I would only add to ask when he gets his bipap at what point do they provide or recommend a backup machine?. My husband is on his almost 24 hrs per day and only by a chance conversation (asking for more filters) did they mention that the backup machine is issued once a person passes the 16 hours mark. So we should have had ours much earlier. Just is, if his current machine were to malfunction then we are in real trouble without a backup